Why mothers with disabilities deserve better

Motherhood, along with everything associated with it, has been a prominent topic in the news for years. Whether it is maternity leave, motherhood and adoption for LGBTQ parents or abortion, various aspects of having kids have been hot topics with politicians, activists and the everyday citizen.

However, motherhood for people with disabilities is a topic that gets overlooked again and again. According to an article written by Robyn Powell, attorney advisor at the National Council on Disability in GPSolo (a publication of the American Bar Association), more than 6 percent of parents in the United States are living with disabilities with children under the age of 18 — approximately 4.1 million people, though research surmises numbers are even higher than that. It seems like mothers with disabilities would be more prominent in everyone's minds.

“One of the worst things anyone ever said to me was, ‘How could you do that to your kid?’” A., a 32-year-old woman and mother, tells me. She was born with cerebral palsy due to birth complications. “It’s like, because I’m disabled, [people think] I can’t love my kid or take care of him like a regular person. It’s insulting and… infuriating. I’m just as good [a mother] as anyone else. Probably better because I know compassion.”

She says that the hardest thing about being a mother with disabilities isn’t her actual disability or the symptoms associated with it, but the way society treats her because of it. When she expressed the desire to become a mother, people, including her doctor and her “own freaking mother” tried to talk her out of it despite it being her dream.

In 2012, the National Council on Disability released a report called "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children," with the aim to “advance understanding and promote the rights of parents with disabilities and their children.” They found that one of the biggest problems parents with disabilities face is retaining custody of their children. Between 40 and 80 percent of parents with an intellectual disability lose custody of their children, while findings were as high as 70 to 80 percent of parents living with mental health conditions. Around 13 percent of parents living with a physical disability have been discriminated against during custody cases, and deaf or blind parents also “report extremely high rates of child removal and loss of parental rights.”

Buck v. Bell, a court case that dates back to 1927, declared that it was constitutional for women with disabilities to be sterilized against their wills. The case involved an institutionalized woman named Carrie Bell, the daughter of a woman that was also in a psychiatric facility. At age 17, she was raped and gave birth to a daughter with disabilities, and it was determined then by the institution that she should be sterilized. Eventually, under Virginia’s laws, Bell’s sterilization was deemed legal. Justice Oliver Wendell Holmes Jr. stated that it is “better for the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…Three generations of imbeciles are enough.”

More than 65,000 United States citizens were involuntarily sterilized by the 1970s, and by 1999, 27 states had restrictions for mentally ill parenthood on the books. A judge had to stop the parents of an adult woman with disabilities from forcing her to get an abortion “against her beliefs” and from having her tubes tied so she wouldn’t be able to conceive in the future. This happened as recently as 2012.

Forced sterilization of children with disabilities by their parents has been on the rise since 2004, when Ashley X, a 6-year-old child, began treatment to ensure she would never have the body of an adult. She was given high doses of estrogen to fuse her bones and stop growth, breast bud removal surgery and a hysterectomy. It has since been dubbed the Ashley Treatment. The director of the National Disability Rights Network, Curt Decker, believes that there are potentially thousands of families “actively exploring the possibility” of the Ashley Treatment for their own children.

While the legal rights of disabled mothers remains a pressing concern for disabled people and activists, the societal pressure disabled mothers and potential mothers face is also damaging. Cassandra, a mother with physical disabilities, says that she often gets questioned by total strangers about her parental abilities. Another mother with physical disabilities discusses how she and her husband married around the same time as several friends: “Almost immediately… my fellow brides would complain about the annoyance they felt when people peppered them with questions about when they were going to have a baby. That certainly wasn’t a question that people lined up to ask us.”

Like A., many women with disabilities face discrimination from their own family members, who don’t understand what it means to live with disabilities. When Jessica, a woman that has cerebral palsy, told her mother she was pregnant with twins, her mother responded, “Now your husband has three babies.”

Carrie, a mother with physical disabilities, faced discrimination from her father, who told her it was irresponsible for her to have children, predicting she would be an “unfit mother.” She says she turned out to be one of the “fittest mothers” she knows.

For these laws to eventually change, societal attitudes need to change. Salamishah Tillet, an associate professor of English and Africana studies at the University of Pennsylvania, says, “We are stuck in a hierarchy of traditional reproductive rights activism, which has historically placed abortion as its primary concern and other issues, like forced sterilization, far below.”

Disabled rights activists such as ADAPT, a grassroots organization that seeks “to assure the civil and human rights of people with disabilities to live in freedom,” work tirelessly to change the lives of people with disabilities nationwide, including mothers with disabilities.

“I’ll probably be dead by then,” A. says, “but I can’t wait for the day things change for disabled [mothers in] this country. That’s the future I want to see.”